KATHLEEN KENT:Nearly six years on from a massive stroke which left her unable to move, eat, drink or speak, Kathleen Kent has found a way to live and communicate again, writes KATE HOLMQUIST
IT WAS AN ordinary day: February 25th, 2004. Thirty-five-year-old Kathleen Kent said goodbye to her husband, Brendan, and sent her two sons, Conor (then seven months) and Seán (then three years old), off to playschool, at the start of a busy day off from her accountancy practice in Co Waterford. “Little did I know that that was the last time I would be able to kiss and hug Brendan or my children, or that was the last time they would hear my voice. I would never walk out of my house again.”
Kathleen kept a dentist’s appointment, then popped into a local art gallery, her face still numb from anaesthetic. When she slurred her words, speaking with the gallery receptionist, she thought nothing of it, blaming the anaesthetic. When she felt nauseous, she sat down on the gallery steps, then fainted. The gallery receptionist called an ambulance. Kathleen came to and protested to the ambulancemen that she was fine. She hadn’t eaten since breakfast, that’s all it was. In Waterford Regional Hospital AE, Kathleen was still standing, but within the next 24 hours, her life and those of her family would be devastated.
Kathleen had suffered a massive stroke in the brain stem, robbing her of the ability to move, eat, drink, speak or express emotion. She was incontinent and had double vision.
“I remember lying in intensive care and a nurse was at my side when a nun entered and began to wring her hands and approach me. She bent over me and patted my head and said to the nurse, ‘the poor girl hasn’t a chance’. I thought I had only days left to live and wouldn’t ever see my children again.”
Within 48 hours Kathleen was transferred to Cork Regional Hospital and diagnosed with locked-in syndrome, the condition suffered by Jean-Dominique Bauby, who managed to write a book (later a film) about it, The Diving Bell and the Butterfly. From the beginning, Kathleen tried desperately to communicate, first by blinking.
Her husband used to sit by her bed and ask simple questions, such as ‘Is your name Kathleen?’, ‘Are you female?’ and ‘You have two boys?’ Kathleen would look at the ceiling if it was true and close her eyes if it was not.
“I vividly remember Brendan speaking to neurologists at the end of my bed and saying ‘she seems to understand’, and the neurologists saying ‘in that case, she probably does’ – and I was screaming with frustration in my own head: ‘I do understand!’ No attempt was made to address me or in any way to include me in the conversation. In fact, they weren’t even facing me.”
Nearly six years later, Kathleen and I are in her apartment at a Cheshire Home in Waterford – a kitchen, living room and bedroom which feel homely, elegant and non-institutional, with a scented candle burning on the table – communicating in the only way that Kathleen is able. Using one finger on her left hand, she uses predictive text on a DynaVox box like the one used by Stephen Hawking, with software designed by her brother and best friend, Tom (“he tells me what I don’t want to hear”).
She is strapped into a wheelchair, the straps carefully hidden by her clothes, which all have slits cut in the shoulders so that she gives the impression of sitting up on her own. Looking well-groomed is important to her.
With enormous physical effort, she is able to twist her head towards me and smile when she agrees or finds something amusing, and to look down when she feels grief or disagrees. Already, we have been communicating for weeks via e-mail, with me asking the interview questions and Kathleen answering.
“Having locked-in syndrome is like wearing a straitjacket. You can see, hear and understand everything, but cannot move,” she has written. But it’s only when I meet her face to face that I see how devastating her physical condition is, and why, as she tells me, people who meet her in shops in the town often assume that she has “no intelligence”.
“My physical body has died, and neither I nor Brendan nor kids, family or friends can do anything about it,” she writes on her Dynavox. Her face bows downwards.
Brendan has already warned me that this is not a story that deserves a positive “spin”. Kathleen’s neurologist, Dr Mark Delargy, has said that Kathleen wouldn’t be alive without the high-quality care and love provided by her husband and extended family, and by the Cheshire Home where she lives, and that there is no doubt that her life is “nightmarish”.
Kathleen writes: “Having a massive stroke, as I had, is like standing on top of a very steep cliff and falling to the bottom. Trying to understand what just took place, learning to cope and at the same time trying to recover from the fall and muster sufficient strength and motivation for the almost impossible task of climbing back up with no climbing experience, navigation or equipment. Then you realise you are on a path that doesn’t go to the top, so you will never again stand on the top.”
People who are “locked in” have to draw a line under their old lives and enter new ones where they can’t scratch an itch, can’t adjust their glasses when they don’t fit properly over their eyes, can’t eat most of their favourite food and, most crucially of all, can’t parent their children as they would have wanted.
The pain of separation from her children was unbearable for Kathleen from the outset. “To this day I remember Brendan saying to the neurologists: ‘It’s been five weeks, a very long time, and the children haven’t seen their mother – will I bring them to visit?’ The neurologist pondered for what seemed ages, but in reality probably seconds, and eventually said: ‘No, wait a little longer’. During this time I wanted to shout ‘no way!’. I was thinking of Seán, just gone three, who wouldn’t understand. I could not hug him or talk to him, apart from the altogether frightful way I would appear to a child with about 15 tubes attached to me. To this day my relief is immense.”
Brendan says that it is a sign of Kathleen’s selflessness that she refused to allow her two boys to visit even though she was dying to see them. When I tell Kathleen what Brendan has said, she begins to weep. Keeping her two beautiful young boys away was a case of “self-preservation”, she tells me over the Dynavox. Seeing Seán and Conor without being able to hold them and communicate with them would have been too much for her to bear. “I knew how distraught I would be. If I could not hug and speak to them, it would deeply and adversely affect me.” She bows her head. I reach for a tissue to wipe her eyes, and then my own.
OVER NEARLY two years of hospitalisation, she struggled to get back to normal. “After months in the intensive-care unit they decided I should try to sit up. The nurse slightly rose the back of the bed and I found the pain excruciating. I begged to lie flat again but she was insistent I remain semi-sitting for five minutes. This continued each day until I sat for a few hours. Then it was decided that I should sit on a chair. I, in my innocence, assumed an ordinary chair and thought ‘wow, I am returning to normal’. Instead, I was lifted into a wheelchair. I was devastated. I thought ‘this can’t be happening’. I could only tolerate 10 minutes in the wheelchair, I was in extreme discomfort. I couldn’t lift my head – it lay on my chest so if you wanted to see my face you had to kneel down in front of me. After 10 minutes I begged to go back to bed. This continued for weeks, and even though my tolerance increased I was never comfortable. My head was a huge problem – it would be almost two years before I could lift it to a normal height, so it was propped by pillows lying on my shoulders but continued to flop to the side.”
Despite her efforts, she was aware that not everyone shared her sense of hope. For example, she overheard a nurse telling a work colleague: “I am astounded she has survived, I didn’t think she would.” She cried all the time and her neurologist suggested anti- depressants. “I thought in my own mind: ‘Isn’t it entirely normal I am crying? My world no longer exists. I haven’t been well enough to see my children. I can’t speak, can’t walk, can’t move, can’t swallow, and the rest of the world carries on oblivious to this and is acting like nothing happened – wouldn’t you be weepy too? So why mask this feeling?’ ”
To this day, Kathleen takes anti-depressants, but while they make her less sad, the pills don’t ease the hurt of being unable to be a hands-on mother. More than a year after the stroke, she got a place at the National Rehabilitation Hospital in Dún Laoghaire, Co Dublin, a delay that Dr Delargy describes as “ghastly”. The hospital needs double the number of beds it currently has to rehabilitate stroke sufferers.
The rehab gave her the limited skills she has now acquired, getting her to the point where she could go home to spend time with her sons. When she first saw them again, her youngest reacted badly. “I was a complete stranger to him. A stranger was coming into his house and taking away his dad’s attention. Now he is totally different: he interacts very well with me, opening doors, giving me sweets, telling me if they are too hard for me. Whispering to his brother ‘let Mam win!’ when we play together.
“The eldest boy reacted differently. I had a relationship with him before the stroke. He was initially shy with me, but then overly concerned for my well-being. He’s more relaxed now but still frets a little.”
Twice a week she visits the family home, travelling in a specially-fitted van, in Dungarvan, Co Waterford. The boys, now aged six and nine, run in and out, and Kathleen asks for no more than just to be there, “unnoticed”. “Life continues its normal pattern. I am happy for the children just to know I am there.”
But that doesn’t take away the pain. “I regularly feel grief-stricken. Examples include coming back to Cheshire after a family day out while the others go home; not being able to comfort my children when crying, seeing someone else caring for my children; not being able to accompany them on the first day of school; seeing them getting very excited about going abroad on holidays and knowing that I won’t be part of it. Even if I recover tomorrow, five years of their lives have passed and it will never be regained.”
She hopes that stem-cell research will find a way to cure her body, but in the meantime she does her best to show her love and care for her sons “by participating fully in their lives, attending their activities whenever possible, not allowing my disability to cause them to lose out or in any way restrict them, to be visibly happy and sad for them, tell them how proud I am of them – but most of all I think to spend quality time with them and to listen to them and laugh with them.”
Kathleen says that her parents, Brendan’s parents and the extended family have been like surrogate parents to her boys, treating them as if they were their own. In the best of all possible worlds, she would live at home in Dungarvan with Brendan and the boys, yet while the house has been adapted to her needs, the Health Service Executive cannot provide night-time care and has advised the family that it is in Kathleen’s best interest to remain at the Cheshire Home.
She is like a newborn to care for, needing to be fed, washed and changed – hours of toil for the carer. Kathleen says it would be too much for Brendan – for anyone – to be expected to continue working, to raise two boys and to provide 24-hour care for her.
“The wonder of this situation is that people don’t lose their reason,” says Dr Delargy. “It’s a nightmarish condition and the more understanding you gain about it, the more nightmarish it becomes.”
PEOPLE ACQUAINTED with The Diving Bell and the Butterfly might think that Kathleen has achieved a higher state of insight, even consciousness, due to being trapped in a “dead” body. Kathleen is typically dry in her answer: “I do a lot of thinking simply because I have more time on my hands.”
Rom Houben, the German locked-in survivor who was discovered to be intelligently alive 23 years after he was declared to be in a vegetative state, has been reported as having out-of-body experiences. Kathleen is familiar with the phenomenon. One night she found herself looking down into her and Brendan’s sitting room at home. Her son Seán had always insisted on wearing his red Wellingtons everywhere, even to special occasions. “When I was looking down I could see Sean was very distressed because he couldn’t see the red Wellingtons. I could see them in a corner, but I couldn’t tell him or point them out. I was in anguish and terribly upset.”
Was the vision simply an expression of her frustration? Kathleen doesn’t know, but she does struggle to remain alive for her sons.
Delargy says: “For an outsider, it’s easy to form the opinion that you would rather not survive. You have to presume that, in the past, people with locked-in syndrome died because it was assumed people did not want to live. Locked-in syndrome was deemed to be futile – but if you have never had the condition how could you know what you would feel? We all suffer from an ill-advised view on what is the core of our life.”
I finally dare to ask Kathleen: “Are you happy to be alive? Or have you wanted to die?”
She answers: “It has changed. For a long time after the stroke I wasn’t happy to be alive because the quality of my life was so poor, but these days things are different. The quality of my life, while very poor in comparison to that before my stroke, is much improved. The main thing, however, is my children are at ease with me being part of their lives, and I don’t want to cause more heartache and disruption.”
Kathleen tells me of another nightmare, where she was looking down on her home village of Owings, Co Waterford. There was a coffin being carried into the church and it was hers. “My fear of the coffin going into the church was real and vivid.” In these dreams, the coffin never entered the church because Kathleen wouldn’t let it.
She has had this nightmare at least three times. Three times, she chose life.
“So as bad as things are, you choose to be alive, to be here now?” I ask.
She looks at me with an endearing smiley grimace to indicate “yes”, then looks down. She’s sad, but she is at least able to watch her boys grow up, even if that means visiting a few times a week to sit in a wheelchair in the corner of the room.
“I myself took a lot for granted before it was taken from me. Someone else, but not me. Nobody ever believes it will happen to them.”
